September is Sickle Cell awareness month and all over Facebook Sickle Cell Warriors and their families have changed their profile pictures to add awareness frames. Warriors are sharing facts about Sickle Cell Anemia and discussions surrounding this “rare disease” are happening more and more frequently. As we share facts about the disease itself we are also sharing our personal experiences with this life threatening and debilitating disease.
Sickle cell anemia an inherited form of anemia — a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body. ( 1 )
Sickle cell disease is a group of inherited red blood cell disorders. In the United States, most people who have sickle cell disease are of African ancestry, but the condition is also common in people with a Hispanic background. Because the disease runs in families, couples planning to have children can have genetic testing. ( 2 )
Warriors diagnosed with Sickle Cell disease may experience frequent pain, organ damage/failure, strokes, pneumonia and a host of other debilitating outcomes as a result of the disease.
It is difficult for some to understand exactly what Sickle Cell Warriors experience because many warriors keep their struggles a secret. They suffer and don’t share gruesome details of the pain they are experiencing. When speaking with Andrea Hall about her daughter, Shakira Martin, we talked specifically about the “shame” some warriors feel and where it stems from. Andrea shared with me that Shakira did not want anyone to pity her. She wanted to be like everyone else. She requested her port be placed out of sight so that attention would not be drawn to it.
According to her mom Shakira always had a special zest for life growing up and it continued into adulthood. “Her determination to live a happy fulfilling life transcended all pain. She made it her life mission to not suffer in silence and wanted her fellow sicklers to do the same” Shakira traveled the world and enjoyed playing mas during Carnival. She was the life of the party and I can vividly imagine her breaking out of the hospital to go see Beyonce on tour.
One of her biggest accomplishments was embarking on a year long journey to become Miss Jamaica Universe 2011. She was healthy the entire year during the competition and she won!
Shakira had the idea of starting a foundation to help raise funds for other warriors to encourage them to “Live no matter what!” She knew all too well what it meant to be in pain and stuck in a hospital room. Thus, Shak’s Hope was born. Shakira lost her battle in Aug 2016 and her mom Andrea leads the foundation in her honor.
Shak’s Hope provides services, awareness and quality to those affected by Sickle Cell Anemia in South Florida and the Caribbean. Please consider donating, volunteering or sharing their services with Sickle Cell Warriors who may benefit from the support.